Below you will find links to articles and other resources on the topics of insurer and law enforcement use of genetic information from a variety of perspectives. Many of these articles are publicly available, although a handful may be behind paywalls.
Insurer Use of Genetic Information:
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NHGRI, Genetic Discrimination (January 2022)
National Institutes of Health information about federal protections regulating health insurer use of genetic information
https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination -
Jarrod O. Anderson, Anna C. Lewis & Anya E. Prince, The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information, 22 DePaul J. Health Care L. (2021)
A 50-state survey (completed in 2021) mapping state regulation of life, long-term care, and disability insurer use of genetic information
https://via.library.depaul.edu/jhcl/vol22/iss1/1/ -
A.C.F. Lewis, R.C. Green, & Anya E.R. Prince, Long-awaited progress in addressing genetic discrimination in the United States, 23 Genetics in Medicine 429 (2021)
An article discussing Florida’s 2020 law barring life, long-term care, and disability insurer use of genetic information
https://www.nature.com/articles/s41436-020-01002-y -
American Council of Life Insurers (ACLI), Q&A: Life Insurance Companies and Genetic Information
A pamphlet from the ACLI regarding life insurer use of genetic information
https://www.acli.com/-/media/acli/public/files/pdfs-public-site/advocacy/riskclassificationgt_qanda.pdf -
Patricia Born, Genetic Testing in Underwriting: Implications for Life Insurance Markets, Journal of Insurance Regulation (2019)
An article assessing the potential impacts of life insurer use of genetic information
https://naic.soutronglobal.net/Portal/Public/en-US/DownloadImageFile.ashx?objectId=9554&ownerType=0&ownerId=26013 -
Genetic Discrimination Observatory
An international collaboration of researchers focused on genetic discrimination
https://gdo.global/en -
Gollinghorst, D. et al, Anti-Selection & Genetic Testing in Insurance: An Interdisciplinary Perspective, Journal of Law, Medicine & Ethics (2022)
An article interrogating claims of adverse selection if insurers cannot have access to genetic information
https://www.cambridge.org/core/journals/journal-of-law-medicine-and-ethics/article/abs/antiselection-genetic-testing-in-insurance-an-interdisciplinary-perspective/6A9063081A5F0EF5D0F7518C3BE315D2 -
Prince, A.E.R., The Genetic Information Privacy Act: Drawbacks and Limitations, 330 JAMA 2049 (2023)
An article highlighting the limits of the Genetic Information Privacy Act, a model law that many states have passed in an attempt to shore up genetic privacy.
https://jamanetwork.com/journals/jama/article-abstract/2811606 -
Kristen V. Brown, Genetic Discrimination is Coming for Us All, The Atlantic (November 12, 2024)
A news article highlighting cases of genetic discrimination by life, long-term care, and disability insurers
https://www.theatlantic.com/health/archive/2024/11/dna-genetic-discrimination-insurance-privacy/680626/
Law Enforcement Use of Genetic Information:
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Natalie Ram, E.E. Murphy, & S.M. Suter, Regulating forensic genetic genealogy, 373 Science 1444 (2021)
This commentary describes Maryland’s law regulating law enforcement use of genetic information and describes key elements of the law that make it a model for future lawmaking.
https://www.science.org/doi/10.1126/science.abj5724 -
S.M. Suter, E.E. Murphy, & Natalie Ram, Maryland can be a model for regulating law enforcement use of genetic databases, The Washington Post (June 18, 2021)
A newspaper article discussing the recent Maryland law regulating law enforcement use of genetic information.
https://www.washingtonpost.com/opinions/2021/06/18/maryland-genetic-databases-law-enforcement-regulation-model/ -
Christi J. Guerrini, Amy L. McGuire, Stephanie M. Fullerton, Ray A. Wickenheiser, & Blaine Bettinger, Four Misconceptions About Investigative Genetic Genealogy, J. LAW & BIOSCIENCES., doi: 10.1093/jlb/lsab001 (2021)
An article explaining how forensic investigative genetic genealogy works and addressing some common misunderstandings about this practice.
https://academic.oup.com/jlb/article/8/1/lsab001/6188446 -
Teneille R. Brown, Why We Fear Genetic Informants: Using Genetic Genealogy to Catch Serial Killers, 21 COLUM. SCI. & TECH. L. REV. 118 (2020)
A law review article arguing that, rather than limiting law enforcement use of consumer genetic data, regulation should focus on more broadly improving user consent processes and more transparent privacy and security measures.
https://journals.library.columbia.edu/index.php/stlr/article/view/5765/3907 -
Christi J. Guerrini, Louiza Kalokairinou, Jill O. Robinson, Whitney Bash Brooks, Stephanie M. Fullerton, Sara Huston, Jacklyn Dahlquist, Diana Madden, Norah Crossnohere, Nicola Campoamor, John F. P. Bridges & Amy L. McGuire, Investigative genetic genealogy practices warranting policy attention: Results of a modified policy Delphi, PLOS GENETICS, doi: 10.1371/journal.pgen.1011520 (2025)
An article reporting the results of structured discussions among experts across professions relevant to forensic investigative genetic genealogy (“FIGG”) identifying and prioritizing FIGG practices for policy attention and developing policy options for addressing them.
https://journals.plos.org/plosgenetics/article?id=10.1371/journal.pgen.1011520 -
Christi Guerrini, David Gurney, Steve Kramer, CeCe Moore, Margaret Press & Amy McGuire, State Genetic Privacy Statutes: Good Intentions, Unintended Consequences?, BILL OF HEALTH, Aug. 10, 2023
A commentary concerned that some state Genetic Information Privacy Acts may inadvertently regulate forensic investigative genetic genealogy (“FIGG”) in unexpected ways that may hamper or prevent its use.
https://petrieflom.law.harvard.edu/2023/08/10/state-genetic-privacy-statutes-good-intions-unintended-consequences/ -
U.S. Dep’t of Justice, Interim Policy: Forensic Genetic Genealogical DNA Analysis and Searching (2019)
A federal policy document setting forth how forensic investigative genetic genealogy (“FIGG”) shall be conducted by investigative agencies within the Department of Justice (e.g., the FBI) and other entities receiving grants funds used for FIGG.
https://www.justice.gov/olp/page/file/1204386/dl -
Mike Baker, To Identify Suspect in Idaho Killings, F.B.I. Used Restricted Consumer DNA Data, N.Y. TIMES, Feb. 25, 2025
A news article reporting that the FBI violated its own policy governing FIGG in investigating the murders of University of Idaho students.
https://www.nytimes.com/2025/02/25/us/idaho-murders-bryan-kohberger-dna.html